National Collaborative to Improve Care of Children With Complex Congenital Heart Disease

Brief description of study

The purpose of this initiative is to improve care and outcomes for infants with HLHS by
expanding the NPC-QIC national registry to gather clinical care process, outcome, and
developmental data on infants with HLHS between diagnosis and 12 months of age, by improving
the use of standards into everyday practice across pediatric cardiology centers, and by
engaging parents as partners in the process.

Detailed Study Description

The purpose of this initiative is to improve care and outcomes for infants with HLHS by: 1)
expanding the established NPC-QIC national registry to gather clinical care process, outcome,
and developmental data on infants with HLHS between diagnosis and 12 months of age, 2)
improving implementation of consensus standards, tested by teams, into everyday practice
across pediatric cardiology centers, and 3) engaging parents as partners in improving care
and outcomes.